A publicly funded hospital can’t refuse assisted death

By Ottawa Citizen Editorial Board

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[D]uring the bleakest, most vulnerable period of their lives, terminally ill patients should be able to count on top-notch care and generous doses of compassion. But in one key area, Canada’s Catholic hospitals are letting them down.

At St. Paul’s Hospital in Vancouver, a dying 84-year-old patient who had requested a medically assisted death was required to go to another hospital, and his last day was pure agony as an ambulance shuffled him between institutions. St. Paul’s would not even permit him to be assessed for assisted death on its premises.

Catholic health providers across the country have said that while medically assisted dying is now legal, their faith does not allow them to participate. “These organizations neither prolong dying nor hasten death, and that’s a pretty fundamental value for them,” says the president of the Catholic Health Alliance of Canada.

We have argued before that individual choice must be the over-arching principle behind assisted dying decisions. While, in accordance with strict legal rules, a patient should be able to request assisted death, individual medical practitioners should not be forced to provide it against their own ethics.

But individual rights don’t apply to publicly funded institutions. If no individual health care expert in a Catholic hospital will personally support a medically hastened death, the publicly funded institution itself must still find a qualified practitioner who will. Forcing those in pain and mental distress to leave the site in order to obtain even an end-of-life assessment is simply inhumane.

In Ottawa, the situation is particularly complicated for Bruyère Continuing Care, a Catholic facility. Although organizations that support Catholic health care don’t want even a conversation about assisted dying to take place there, the Bruyère is the only publicly funded, complex palliative-care option in this region. To its credit, it appears to recognize that it must be more flexible.

A Bruyère administrator told the Citizen that if a patient requested information, the facility would be bound to acquiesce. If the patient were too ill to be assessed off-site – which is likely in palliative cases – the assessment, at least, could be done without moving the patient.  Still, the person would have to transfer elsewhere to actually obtain a medically hastened death.

Provincial governments must step in – yet in Ontario, at least, regulations aren’t expected until 2017. Why should a publicly funded institution be permitted to refuse a service to the dying that is legal and that could be performed on its premises with considerably less agony than exiling the patient?

Force individual medical practitioners to end a life? No. Tell institutions to follow the law? Yes. A dignified ending shouldn’t be hostage to institutional beliefs.

Complete Article HERE!

B.C. man faced excruciating transfer after Catholic hospital refused assisted-death request

By Tom Blackwell

Ian Shearer’s daughter, Jan, says she was surprised by his request for doctor-assisted death, but she realized that he was dying “a slow, painful” death.
Ian Shearer’s daughter, Jan, says she was surprised by his request for doctor-assisted death, but she realized that he was dying “a slow, painful” death.

Ian Shearer had had enough of the pain and wanted a quick, peaceful end, his life marred by multiple afflictions.

But the Vancouver man’s family says his last day alive became an excruciating ordeal after the Catholic-run hospital caring for him rebuffed his request for a doctor-assisted death, forcing him to transfer to another hospital.

The combination of the cross-town trip and inadequate pain control left Shearer, 87, in agony through most of his final hours, says daughter Jan Lackie.

“To hear him crying out, screaming … was just horrible,” said Lackie, breaking into tears as she recalled the day in late August. “That’s what keeps me from sleeping at night … I don’t want any other person to go through what he did.”

Shearer’s experience at St. Paul’s Hospital highlights one of the thorniest issues concerning assisted death: the decision of most faith-based —  but taxpayer-funded — health-care facilities to play no part in a practice made legal by the Supreme Court of Canada and federal legislation.

Ian Shearer and daughter Jan Lackie.
Ian Shearer and daughter Jan Lackie.

Lackie said the suffering her father endured shows why it is important that church-governed facilities, including dozens of hospitals, nursing homes and hospices across Canada, be required to allow assisted deaths within their walls.

“We have nine judges who said ‘Yes’ to medical assistance in dying,” she said. “I don’t understand how the Vatican has so much power, even here in Canada.”

But the bill that implemented the Supreme Court’s ruling in June does not oblige any institution to permit the practice.

And Catholic health organizations say their objection to assisted death flows from deeply held beliefs, while noting there are numerous other, less contentious procedures available at some facilities but not others.

“Life is sacred and the dignity of the person is important,” said Michael Shea, president of the Catholic Health Alliance of Canada. “These organizations neither prolong dying nor hasten death, and that’s a pretty fundamental value for them.”

Shaf Hussain, a spokesman for Providence Health Care, which operates St. Paul’s, said he could not comment on Shearer’s case specifically. But under a policy finalized this summer, he said, the Catholic organization arranges to transfer patients as comfortably as possible when they express a desire for assisted death.

Even the medical assessment required under the law and the signing of consent forms must take place outside Providence properties.

“All feedback we take very seriously,” said Hussain. “We’ll be working with our partners in the health care system to ensure the patients’ needs do come first … and to minimize the discomfort and pain.”

Shearer, a retired accountant originally from Calgary, suffered from spinal stenosis – a narrowing of the spine that can put pressure on the spinal cord – heart disease, kidney failure and, toward the end, sepsis, said his daughter.

He spent about three weeks at St. Paul’s, the closest hospital to where he lived in Vancouver, said the Calgary woman. The spinal condition was so debilitating, “just to touch him, he would scream.”

Lackie said she was surprised by his request, but supportive, realizing that her father was dying “a slow, painful” death.

It would be days, however, before Shearer was transferred to Vancouver General, and on the designated date – Aug. 29 – the ambulance arrived more than three hours late, said the daughter.

The man’s dose of the pain drug fentanyl had been reduced to ensure he was lucid enough to consent to the assisted death, but as time wore on the pain grew worse, and there was a shortage of the narcotic on his ward, she said.

Already in agony, Shearer cried out desperately with each bump during the four-kilometre ambulance ride, said Lackie.

He eventually received the series of injections ending his life at Vancouver General, a “beautiful,” peaceful death, she said.

Jan Lackie holds father Ian Shearer's hand on his last day, when a Catholic hospital's refusal to consider his request for assisted death forced a painful transfer to another hospital.
Jan Lackie holds father Ian Shearer’s hand on his last day, when a Catholic hospital’s refusal to consider his request for assisted death forced a painful transfer to another hospital.

Dr. Ellen Wiebe, a B.C. physician who has carried out several assisted deaths, provided the service for Shearer, one of three patients from St. Paul’s she has seen for the same reason.

To get around the hospital’s ban on patients even being assessed there, she said she makes “flower visits:” masquerading as a friend bringing a bouquet.

Assisted-death bans can not only lead to suffering during the transfer itself, but effectively deny patients the right in areas where there is no alternative to the faith-based institution, said Shanaaz Gokool, head of the group Dying with Dignity.

“This is going to be a real issue, and it’s going to be a real issue across the country.”

The facilities are causing vulnerable patients suffering because of a decision that benefits only the institution, argued Juliet Guichon, a bioethicist at the University of Calgary.

“How can such harm be justified?”

Complete Article HERE!

Is turning off a pacemaker ever the right thing to do? When a life-saving heart implant becomes a painful burden

  • After almost 20 years of living with a pacemaker, Nina made a decision
  • Ms Adamowicz, 71, no longer wanted the device that was keeping her alive
  • After some consideration doctors agreed, and the woman died peacefully
  • Thought to be the first case in the UK, their choice has sparked controversy

By Rachel Ellis

[A]fter almost 20 years of living with a pacemaker, Nina Adamowicz decided she no longer wanted the device that was keeping her alive.

It had been implanted in 1996, and for the first decade it ‘improved’ her life and symptoms — she had a form of hereditary heart disease.

The pacemaker sent regular electrical pulses to keep her heart beating steadily, and she was grateful for ‘being given extra time’, she later recalled.

However, she then had a heart attack and her health declined so that by 2014, her heart was working at just 10 per cent of its capacity.

Last year, Polish-born Ms Adamowicz, 71, who had lived in the UK for more than 30 years, revealed she wanted the pacemaker turned off, even though she knew it would lead to her death.

After almost 20 years of living with a pacemaker, Nina Adamowicz decided she no longer wanted the device that was keeping her alive
After almost 20 years of living with a pacemaker, Nina Adamowicz decided she no longer wanted the device that was keeping her alive

It was like being ‘in line for execution and being told “not yet”, she said in an interview for BBC Radio 4.

‘It’s not about “I want to die”, I’m dying,’ she added.

After a series of medical examinations and psychological tests to determine whether she understood what switching off her pacemaker would mean, doctors agreed, and last October Ms Adamowicz went into a local hospice with her family for the pacemaker to be turned off – a procedure that took 20 minutes.

She described her body as feeling heavy and she felt a little nauseated – but she also felt at peace, her family told the BBC.

She slept through the night, returned home in the morning and died that night.

Her case – thought to be the first of its kind in the UK – raises profound ethical issues about when it is right to turn off someone’s pacemaker, or indeed withdraw other medical treatment such as dialysis for kidney failure, if that’s what they want.

In fact the law itself is very clear on this point, according to Miriam Johnson, professor of palliative medicine at Hull York Medical School.

‘A mentally competent adult has the right to refuse medical treatment, whether it is turning off a pacemaker or stopping dialysis, even if that treatment is prolonging their life and withdrawing it will lead to their death,’ she says.

‘By turning off the device, the disease or illness will kill the person, not the doctor.’

However, some doctors feel it’s uncomfortably close to euthanasia — the difference is that euthanasia involves overriding Nature.

Some doctors feel that turning off a pacemaker is uncomfortably close to euthanasia — the difference is that euthanasia involves overriding Nature
Some doctors feel that turning off a pacemaker is uncomfortably close to euthanasia — the difference is that euthanasia involves overriding Nature

‘The difficulty with a case like this is that when a patient is dependent on a pacemaker, there is a direct connection between withdrawing the treatment and them dying within the next few hours,’ adds Professor Johnson, explaining that doctors’ role after all is to protect the vulnerable.

Around 35,000 patients in the UK have a pacemaker fitted each year. The device’s role is to keep the heart beating steadily – it gives it a boost by delivering electrical impulses so that the heart contracts and produces a heartbeat.

The computerised match-box sized device is implanted just under the skin, usually just below the left shoulder and electrical leads are then fed down a vein into the heart.

‘In a significant number of pacemaker cases if you suddenly took the pacemaker away, the heart would stop beating,’ explains Dr Adam Fitzpatrick, a consultant cardiologist and electrophysiologist at Manchester Royal Infirmary and Alexandra Hospital, Cheadle.

He adds: ‘It is very unusual for a patient to ask for their pacemaker to be turned off.’

Even if the patient is dying, a pacemaker does not need to be switched off, says the British Heart Foundation.

'A pacemaker's purpose is not to restart the heart and it won’t cause discomfort to someone who’s dying,’ said a spokesperson for the British Heart Foundation
‘A pacemaker’s purpose is not to restart the heart and it won’t cause discomfort to someone who’s dying,’ said a spokesperson for the British Heart Foundation

‘Its purpose is not to restart the heart and it won’t cause discomfort to someone who’s dying,’ said a spokesperson.

But the picture is slightly different with other heart devices such as Implantable cardioverter defibrillators (ICDs) which are used to correct an abnormal heart rhythm rather than helping the heart beat steadily.

These devices, implanted in around 9,000 people in the UK every year, kick in when an abnormal heart rhythm occurs which can cause sudden cardiac arrest (where the heart stops beating).

Implanted under the collarbone as a pacemaker is, they work by firing a small electric shock into the heart to kick-start it (some pacemakers have this function too).

This might happen once every few months or not even for years.

However, this can be both painful and traumatic, especially at the end of life, and can lead to a prolonged and distressing death by continuing to give electric shocks.

In one particularly upsetting case reported in a US medical journal, a man suffered 33 shocks as he lay dying in his wife’s arms — the ICD ‘got so hot that it burned through his skin’, his wife later reported.

Implantable cardioverter defibrillators work a bit differently from a pacemaker, as they are used to correct abnormal heart rhythm with an electrical current
Implantable cardioverter defibrillators work a bit differently from a pacemaker, as they are used to correct abnormal heart rhythm with an electrical current

‘Dying patients often have multi-organ failure which can cause metabolic and chemical changes that may trigger arrhythmias, faulty heart beats and in turn activate the ICD,’ explains Dr James Beattie, a consultant cardiologist at the Heart of England NHS Foundation Trust, Birmingham.

‘If the device goes off when the patient is conscious, the shock is like a blow to the chest, causing discomfort and distress. It may also fire repeatedly.

‘This may result in a distressing death for the patient and distress for the families.’

Yet despite this suffering, 60 per cent of hospice patients do not have their implant deactivated before death, according to U.S. research published in the Annals of Internal Medicine.

Furthermore, a 2011 survey by the National Council for Palliative Care suggested that only 40 per cent of UK hospices have access to the technology to deactivate the device urgently, potentially risking an undignified and painful death in hundreds of patients should they suddenly deteriorate.

Switching off the device involves holding a magnet over it, temporarily closing a magnetic switch incorporated in it.

To turn it off permanently the device has to then be reprogrammed remotely using a ‘wand’ attached to a computer.

Despite the risk of suffering, 60 per cent of hospice patients do not have their implant deactivated before death, according to U.S. research
Despite the risk of suffering, 60 per cent of hospice patients do not have their implant deactivated before death, according to U.S. research

Medical professionals and families face a number of dilemmas when deciding whether to turn off an ICD.

One is the difficulty in accurately predicting when the patient is reaching the end of their life.

‘Determining this isn’t always clear, especially with a condition such as heart failure when patients may have survived crises over many years,’ explains Professor Johnson.

‘This can be complicated further if the patient is suffering from dementia and unable to make decisions about their care.’

There is also an understandable reluctance by patients and their families to take away anything that can prolong life.

‘Patients and their families frequently think of the device as entirely beneficial,’ says Professor Johnson.

‘There is also often unrealistic expectation about what doctors are able to do to keep people alive.’

Many doctors shy away from these conversations, too. A 2008 report from the National Audit Office found a significant lack of confidence in handling end-of-life care across all medical specialities — with cardiologists topping the league.

‘Given they are trained to save lives, talking about death can be seen as professional defeat,’ says Dr Beattie.

But if patients and doctors don’t have that conversation ‘we’re storing up trouble because decisions then have to be made at times of crisis and without planning’, says Simon Chapman, of the National Council for Palliative Care.

New guidance for patients and medical staff to guide them through the ethical minefield of withdrawing heart devices was published earlier this year in the journal Heart.

Just how difficult making such decision can be was dramatically highlighted in the case of Fred Emery.

When his health suddenly went downhill six years ago, doctors recommended turning off the defibrillator that had been keeping him alive for the past 14 months.

When Fred Emery's health suddenly went downhill six years ago, doctors recommended turning off the defibrillator that had been keeping him alive for the past 14 months
When Fred Emery’s health suddenly went downhill six years ago, doctors recommended turning off the defibrillator that had been keeping him alive for the past 14 months

The 73-year-old former manual worker from Kings Langley, Hertfordshire, had had the matchbox-sized device implanted in his chest following a 26-year battle with heart disease.

During that time he’d had two heart attacks, and had already undergone two triple heart bypass operations as well as having several stents (tiny metal tubes) inserted to prevent his arteries blocking.

However, Fred then developed heart failure and ventricular tachycardia — a potentially fatal heart rhythm

Having a defibrillator not only helped with the heart failure, but also any sudden cardiac arrest triggered by the faulty heart rhythm.

But Fred’s condition deteriorated and doctors suggested that as he was nearing the end of his life, it was time to turn off this life-line — to spare him and his family the ordeal of it repeatedly jolting his heart back to life when his body had reached the natural moment of death.

However, despite doctors’ predictions, Fred pulled through and later had the defibrillator reactivated, and it went on to save his life several times before his death this year. His family was angry that doctors had written him off before his time.

Despite doctors’ predictions, Fred pulled through and later had the defibrillator reactivated, and it went on to save his life several times before his death this year
Despite doctors’ predictions, Fred pulled through and later had the defibrillator reactivated, and it went on to save his life several times before his death this year

‘It was awful when they told him to turn it off,’ his wife Shirley, 70, told Good Health. ‘Fred was taken ill at 4pm, and by the next morning the defibrillator was turned off. It was too soon to make that decision — he wasn’t himself and was under pressure to switch it off.

‘After it was reactivated, Fred had six more years. Without the ICD we would have lost him several years ago.

‘He kept it on until a week before his death. By then his heart was working at 15 per cent, he was in a hospice and there was no coming back so we made a decision to turn it off to give him some dignity at the end. He knew what was happening.

The uplifting truth about end-of-life care

By Brandpoint

Preparing for end-of-life

When a loved one is critically ill, hearing that it’s time for hospice care can be devastating news. On top of the emotional upheaval of coping with a terminal illness, you may be unsure what hospice care really is — and believe it’s just an indication your loved one will likely pass away.

Yet the time your loved one spends in hospice care doesn’t have to be sad — for anyone. In fact, says Toni Norman, the senior director of hospice operations for Brookdale Senior Living, hospice can be a deeply rewarding time of great comfort for patients and their families.

“Hospice care is not about waiting for someone to die, and that’s unfortunately a very common misconception,” Norman says. “The goal of hospice is to provide to a patient, who has a life-limiting illness, the physical comfort and medical care they need to stay in their home for as long as possible, while at the same time supporting their caregivers. The hospice team helps families by educating, supporting and identifying any needs they have, ranging from chaplain support to finding mortuaries and veteran benefits.”

The decision to begin hospice care is a communal one, with the patient, caregivers, loved ones and medical professionals contributing to the dialogue. “A terminal diagnosis from a doctor usually begins the process of seeking hospice care,” Norman says. “Also, as a family member’s health begins to decline due to illness, conversations about end-of-life care are proactive and compassionate.”

Brookdale Senior Living’s hospice care providers often encounter common misconceptions about hospice care. Norman offers the truth behind some mistaken beliefs:

* Hospice is for the last few weeks of life. The hospice Medicare benefit is for the last six months, if the disease follows its normal course. “Most people who enter hospice have done so because they’ve received a diagnosis of a life-limiting illness,” Norman says. “But people who enter hospice often live longer, and with a better quality of life, than terminally ill people who do not go into hospice. Many are even able to come off hospice service if their condition improves.”

* Hospice means giving up. Hospice is actually a commitment to a high level of care for a loved one. “It means making them as comfortable and safe as possible so they may enjoy time with their loved ones for as long as possible,” Norman says.

* Patients are heavily medicated. Patients receive medication under strict physician guidelines, and caregivers closely monitor comfort care protocols so each patient’s pain and symptoms are uniquely managed.

* Hospice patients can no longer see their doctors. Patients can continue to see any of their previous doctors. Rather than taking anything away, hospice adds a layer of medical support.

* Hospice care ends when a patient dies. Because hospice cares for the patient’s caregivers and loved ones as well as the patient, hospice team members continue their support for 13 months after the patient passes away. The hospice team provides grief support for the families and will continue to work with them to address any lingering questions, and to help identify their needs.

“The hospice team is comprised of the assigned physician and nurses to provide the direct medical care to the patient, while a chaplain, social worker and bereavement counselor provide additional support and education to families and caregivers,” Norman says.

Hospice ideally occurs in a patient’s home, whether that’s a personal residence or assisted living community. It is a Medicare-reimbursed benefit, and most private insurance providers do also cover some hospice costs.

“End-of-life care isn’t just about taking pain medications to relieve symptoms until death,” Norman says. “It helps people gain emotional strength and carry on with daily life, while improving the quality of life. The goal is to help patients and their families make every remaining moment as comfortable and enriching as possible.”

Complete Article HERE!

How doctors are failing us in death

Never mind assisted-dying, our health care system needs to change the way it deals with the natural end of life

By

Mohamed Dhanani, left, with his father-in-law Ijaz Ahmad at a wedding last year. "The eight different doctors who treated my father-in-law all had different ideas about what (his wishes not to be life support) meant, and how involved the family should be in making treatment decisions," writes Mohamed Dhanani. "This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud."
Mohamed Dhanani, left, with his father-in-law Ijaz Ahmad at a wedding last year. “The eight different doctors who treated my father-in-law all had different ideas about what (his wishes not to be life support) meant, and how involved the family should be in making treatment decisions,” writes Mohamed Dhanani. “This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud.”

I’ve spent much of my career in the health care field, but it took a very personal experience to drive home just how poorly prepared health care providers are to help us through the one certain life-experience that awaits us all: death.

It happened in a hospital in southern Ontario. My father-in-law, Ijaz Ahmad, who lived with insulin-dependent diabetes for 35 years, went into the hospital for a partial foot amputation due to a bone infection.

Prior to surgery, a routine diagnostic test was performed requiring dye to be inserted into his bloodstream. After the surgery, the dye put him into kidney failure while it was being metabolized. Within a day of the surgery all of his organs started to fail and he was put on life support for what we were told would be two to three days so his organs could rest and strengthen — after which, we were told, “the doctors would bring him back.”

He spent the next 18 days on life support. And what became clear over that long 18-day ordeal is that what had clearly become the end of his life would have been unnecessarily prolonged depending on which of the eight doctors we interacted with was treating him that day.

Like so many families who have had the difficult but essential conversation with an aging parent around their end-of-life wishes, we had spoken with him about his wishes. He was clear he did not want to be on life support.

The eight doctors who treated my father-in-law all had different ideas about what those wishes meant, and how involved the family should be in making treatment decisions. This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud.

Some of the doctors acknowledged his wishes but said life support was an essential part of the treatment plan; it was just a temporary measure to aid in his recovery. Others made very little effort to consult with us, and another outright refused! Another doctor assured us he would “bounce back,” though nurses told us this was increasingly unlikely and that the doctor was prone to sugar-coating discussions with families.

Because of this inconsistency, different members of my family were hearing different things — and that made it even more difficult for us to make a decision we all felt comfortable with. Finally, I pulled aside the latest doctor treating my father-in-law and asked him for an absolutely frank and direct discussion. Only then were we able to make an informed decision that respected my father-in-law’s wishes and provided as much comfort as possible to our family.

On my father-in-law’s 18th day on life support, and on what was to be the final day of his life, a new doctor was treating him. This doctor had trained and practiced in the U.K., and had only recently started to work in Ontario. His European training and experience gave him a different perspective on end-of-life care, and one for which we were grateful.

In Europe, the societal conversation on end-of-life care is more advanced than in Canada — they have grappled publicly with these essential issues of decision-making in health care for many years, and physicians have therefore become more comfortable discussing end-of-life decisions with their patients and families.

Not only is this an essential conversation we need to normalize as families and as a society, it is something our health care system must take on as an essential part of its work. All doctors must be trained to discuss end-of-life care in a direct and compassionate way with patients and their families. This will only become more important as people live longer, and as their health issues become more complex as they reach the end of their lives.

Over the last few years, Canadians have engaged in an impassioned debate on assisted death, a debate that culminated in landmark — and controversial — legislation in Parliament. But assisted death is just a small part of the issue.

As my family’s experience illustrates, end-of-life care and the difficult discussions surrounding that care are too inconsistent — inconsistent between institutions and inconsistent between doctors within a single hospital. It is something we can and must fix.

Surrounded by family and friends my father-in-law peacefully passed away within minutes of removing the breathing tube. He was 66 years old. May his soul rest in eternal peace.

Complete Article HERE!

Doctors ‘routinely wrong’ with predictions for when terminally ill will die

Doctors often get it wrong when predicting how long terminally ill people have left to live, new research suggests.

A review of more than 4,600 medical notes where doctors predicted survival showed a wide variation in errors, ranging from an underestimate of 86 days to an overestimate of 93 days.

And it does not appear that more experienced or older doctors are any better at predicting when somebody will die than their younger counterparts.

Doctors' estimates of when terminally ill patients would die were sometimes out by up to three months, researchers found
Doctors’ estimates of when terminally ill patients would die were sometimes out by up to three months, researchers found

he review of existing research on the subject was carried out by a team at the Marie Curie Palliative Care Research Department at University College London (UCL).

Further work is now being carried out to see if it may be possible to train doctors to make better predictions.

Paddy Stone, professor of palliative and end-of-life care at the research department, said: “Delivering the most appropriate care and treatments for those with terminal illnesses is often dependent on doctors making an accurate prognosis.

“Knowing how much time is left can also better equip patients and their carers to make more informed choices about their care. This research suggests that there is no simple way to identify which doctors are better at predicting survival.

“Being more senior or more experienced does not necessarily make one a better prognosticator but we now want to see if we can identify how and why some doctors are better at predicting survival than others and to determine if this is a skill that can be taught.”

Stephanie Aiken, deputy director of nursing for the Royal College of Nursing (RCN), said: “For a dying person and their loved ones, uncertainty can make a very distressing time much harder to deal with.

“Just as when we are born, the precise timing of death can be an inexact science – but nurses looking after people at the end of their lives recognise the positive impact of being as open as possible about what is observed, even if definitive answers can’t be given.

“As a society we have become much better at speaking about death and dying, and respecting and understanding people’s wishes at the end of their lives.

“But there is clearly more to do to improve recognition of the signs that someone is dying, and supporting families with information.”

Janice Jones, whose father, Stephen Flint, died in 2011 from bile duct cancer, said: “We weren’t given an accurate timescale. The doctor was very non-committal. While some people would prefer not to know, having an idea of how much time dad had left would have made us feel more in control of the situation.

“What hurt the most was that the doctor had seen dad just before the evening that he died and hadn’t given us any indication that it would be so soon.

“Knowing would have allowed us to fill our last days with memories rather than get so bogged down in the routine responsibilities of caring for someone who is dying.”

Complete Article HERE!

Early Palliative Care Improves Patients’ Quality of Life

Also increases chances of having end-of-life discussions, study shows

By Robert Preidt

The key to helping our patients die with dignity is improving the palliative care we provide, writes Priya Sayal.

Starting palliative care shortly after a person is diagnosed with incurable cancer helps patients cope and improves their quality of life, a new study shows.

It also leads to more discussions about patients’ end-of-life care preferences, the researchers added.

Palliative care, also called comfort care, is given to improve the quality of life for patients who have a life-threatening disease or terminal illness, such as cancer. The goal is not to cure the patient, but to manage the symptoms of the disease, according to the U.S. National Cancer Institute.

The new study included 350 people recently diagnosed with incurable lung or gastrointestinal cancer. They were randomly assigned to one of two care groups. One group received early palliative care integrated with cancer care. The other received cancer care alone.

The patients were evaluated at 12 and 24 weeks after diagnosis. At 24 weeks, the early palliative care patients were much more likely to report using active and engaged coping styles than the standard cancer care patients.

Early palliative care patients also had much higher quality of life and lower levels of depression at 24 weeks, but not at 12 weeks, the study found.

Thirty percent of early palliative care patients said they had discussed end-of-life care preferences. Just 14 percent of standard care patients had similar talks.

The study was presented recently at an American Society of Clinical Oncology (ASCO) meeting in San Francisco. Findings presented at meetings are generally viewed as preliminary until they’ve been published in a peer-reviewed journal.

“What we found was the patients who received early palliative care were more likely to use adaptive coping strategies — meaning they were more likely to take some action to make their lives better as well as to accept their diagnosis,” lead author Joseph Andrew Greer said in an ASCO news release.

“Palliative care is a key ingredient to improving a quality of life, which is important to both patients and their families,” said Greer. He’s clinical director of psychology and a research scientist at Massachusetts General Hospital.

ASCO spokesman Dr. Andrew Epstein said these findings help show the benefits of integrating palliative care into cancer care.

“A diagnosis of cancer is never easy for patients, so it is promising that we now have a strategy of early palliative care that can help patients cope while improving their quality of life,” Epstein said.

More information

The Center to Advance Palliative Care has more on palliative care.

Complete Article HERE!